Thursday, December 11, 2008

Swallow study results

Well, we are back to thickening up Andrew's liquids. This time to nectar consistency. I thought he was having more of a problem with solids but the speech therapist said it is with liquids again. At the first drink out of his sippee cup he aspirated(went to the lungs) and then had penetrations. Not good! I was hoping that with the Vital Stim we would have been good for a bit longer but I guess 6 months isn't too bad. The SLP also said that she would not recommend Vital Stim again and that maybe we should try something else.... I don't know what that would be, considering we having done the Beckman Oral motor program- that's when we flew to Florida over spring break and spent time with an SLP who specializes in oral motor disorders. ?? Not sure what we should do but I am frustrated at all that we have to do- the eye patching 4 hours a day to make his left eye stronger, 2 hours a day with his AFO's (ankle-foot-orthotics), potty training (what a mess), now thickening liquids and trying some oral motor exercises. AAAGH! I want so much for Christmas to special for him but I know that it will never be what we want. He may never open a gift, or have the excitement of waking up on Christmas morning and rushing to look inside his stocking or understand the meaning of Christmas. Lately I have a hard time looking for gifts for him and telling others what he would want or need. It's just hard. I feel sad and then I look at his sweet smiling face and realize there is no reason to be sad because he is always a happy little boy. Wow, he's teaching me a lot!

4 comments:

Brooklyn said...

Yes, Christmas and Birthdays are hard....maybe it is the gift buying process or maybe it is just that days like that make what our kiddos can't do for themselves stand out a bit more than a "normal"day. Hang in there - you are right - he is an amazing little boy that is teaching you and everyone around him lots and lots!

Karlie Grace said...

Well said Kelly...that stinks about his swallowing but he's still hanging onto some improvement which is great! Keep looking at that sweet smile and those special eyes and take time for an extra snuggle tonight. He's precious!

Grammy said...

Brandi,
I am Kelly's mom and Brooklyn's Grammy. I watch her during the day and help out with her therapies, as well as take her to preschool. Since it's only 2 1/2 hours long and 1/2 hour away, I stay and help out. They made me the "reading lady" and call me Grammy Suzy.
Kelly was telling me about Andrew and that she had added him to Brooklyn's blog. He is gorgeous! What a little cutie.
It IS hard picking out toys for our kiddos...I try to get things that Brooklyn and I can do together .....she eye gazes and useds yes/no cards and we do a lot of pretending. I just got her a bunch of play food to have "pretend meals". Her Pappy and I also got her the PlaySchool Dance Cam. She loves music...this hooks up to the TV, plays 20 preschool songs. You can dance and move and however you want and you'll show up on the TV. She loves the Wiggles and I hold her and dance a lot!
I'll have Kelly send you some of the yes no cards we have made. We keep sets everywhere...on her chair at school, on her stroller, and anyplace we think of! If there is anyway I can be of help, or just a sounding board, please let me know. You can e-mail Kelly or e-mail me at: www.readwritemom@yahoo.com
I am a retired teacher, hence the e-mail name lol!

Suzy aka Brooklyn's Grammy

Felt and Brandi said...

Thanks so much Kelly, Suzy, and Karlie Grace for the encouraging words. I just ordered him a Wall-E that is switch activated and will dance and talk when he hits it. I think he will love it! We had a nice day full of snuggling in our Pj's. Lots of fun!